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As you can imagine this Message Board is in high demand! It takes many volunteer hours to support this very challenging topic. Therefore, due to the overwhelming demand, we have been forced to allow access to this Message Board for MAGIC members only as we do not want to abuse our generous volunteers who devote their time to monitoring and offering their expert help.
To give you a sample of what you can expect in the Members Only area for this message board, a few items have been listed below for your preview.
To join MAGIC and gain full access to all of the Message Boards, Listserv's with hundreds of families and the full services of the foundation, please click here. And thank you for supporting our efforts with your membership!
If you are a member, click here to sign in and go directly to the Insurance Message Board.
NOTE: If you are attending the Educational Convention in Chicago this year, one on one appointments with our Insurance specialist will be available by appointment only.
A few helpful hints while battling to get your child's medical needs covered.
1. Your child's medical office staff have the names of resources to help you.
2. There are programs for uninsured families through some pharmaceutical companies. Call them!
3. The companies we are aware of with "help" for co-pay costs of medicine are:
Chronic Disease Fund 877-968-7233
Health Well Foundation 800-675-8416
Partnership for Prescription Assistance (discounted cards mainly) pparx.org
(please send others if you are aware of them for our list to: jamie@magicfoundation.org -webmaster)
4. For our members we do have important information and guides on appeals.
Other than what is listed here, we apologize for not being able to give you more help. However, Insurance issues are so personal (each policy is different and laws vary from state to state) that it makes it challenging to thoroughly help everyone. As parents who have lived this nightmare ourselves- we honestly wish you success in your fight!
Helpful Insurance Hints
1. "A picture is worth a thousand words". Whether you are applying for an initial authorization or appealing a denial, always include a photograph of your child taken with his/her same age/same gender peers. If other parents are leery of having their children's faces shown, you can take the picture with their backs facing the camera (but make sure you have your child facing forward). The photograph will be putting a "face" on your case and showing the claims examiner that your child is a real person not just a compilation of lab data. The group picture also will show the claims examiner the real height discrepancy between your child and everybody else. That is a lot easier to visualize than just some dots on the growth chart."
Actual Post Archives from this board:
Hi all, I am the mom of an SGA girl. I just saw the info about Blue Cross and GH. My daughter has been on GH iwth BCBS since April of 2006. We had no fight and no delays. Perhaps our endo just worked magic, perhaps the amount of claims my daughter generated with the same insurance plan was a good record. I now work IN insurance for a brokers office in Massachusetts. Before you go all gung-ho for a "definitive" diagnosis (per genetics my daughter IS RSS because she has more that 6 characteristics but she doesn't have the LOOK). The geneticist kept her "differential RSS and/or SGA". RSS is NOT covered by BCBS for GH, SGA is. HOWEVER, I HAD TO PRINT OUT AND READ 18 PAGES OF FOOTNTOES FROM MY INSURANCE COMPANY'S WEBSITE IN ORDER TO FIGURE THIS OUT. Do this BEFORE you have your doctor put in for treatments for anythign. This way you can see is t here is certain "approved wording". I am NOT saying change your child's diagnosis but if your child is RSS (most are SGA truthfully) and insurance covers SGA and NOT RSS discuss wording options with your doctor before they put int for treatment.
Submitted June 26, 2007 09:13 PM by Megan, mom to Emerence
I feel like this board was set up just in time to give me some direction! My son is getting ready to start GH treatment within a week because he is IGF1 deficient. Our ins policy states they do not cover GH treatment. As normal protocol, the dr's ofc submitted the request and Lilly has submitted it to the ins. They tell me there is always the possibility that ins may cover it. I'm aware of ACCESS thru Lilly, but have been told it is based soley on income and doesn't consider other expenses. My concern is that our free trial of meds will run out before the ins appeal process is finished, or it will be denied completely and I won't have other funding set up. Any suggestions as to where to go for assistance, or how to keep the process going so my son's treatment isn't interrupted, would be greatly appreciated.
Submitted June 26, 2007 08:49 PM by Patty
In my prior post I meant nongroup insurance IN CALIFORNIA. Forgot to mention the state. Nancy
Submitted June 26, 2007 08:45 PM
I will also reinforce the importance of staying on top of everyone. I kept a small notebook with all the info/details and that proved to be helpful. Don't be afraid to network and call other parents from Magic who live in your area and may have the same insurance. I did this and it was helpful. People are always willing to help.
Submitted June 26, 2007 07:22 PM by Jill
Hi all, we tried to through ins but were denied because my son's diagnosis is ISS. Because there were no obvious medical reasons for his short stature, and he was not deficient, insurance considered it "cosmetic". Ha, don't tell that to a mother who's child is 14 and 4 feet 2 inches tall! Long story short, we were approved through Eli Lilly's patient access program. My son has been taking hgh for over 3 years now, and all we have to do is send in copies of our income tax returns esch year and we are re-approved. So if ins denies, DON'T GIVE UP! there is help out there.
Submitted June 26, 2007 07:12 PM
Since this is a new topic and I think it's so important, I'm going to post to help get it going! Insurance continues to be the bane of my existence. I'm looking for information about nongroup insurance, probably through the state, for teens. Here's info I can share, though, about Pennsylvania. The state program available through your local Office of Assistance is not income dependent. If you have a child who is uninsurable through private insurance and he/she has a medical disability (as all our children do), the state will insure your child no matter what you make. And that includes a prescription for growth hormone. This change in the state law occurred a few years ago and has saved me tens of thousands of dollars. Nancy
Submitted June 26, 2007 04:41 PM
When we were getting approval, I found I had keep calling between the ped endo's office, the GH company's bridge/support program, and the insurance company to keep the approval process moving forward. I had to call the ped endo's office several times just to get them to fax over the Statement of Medical Necessity. It was frustrating, but by staying on top of it, you will avoid unnecessary delays in the approval process -- and it removes the mystery as to the status of your approval.
Submitted June 26, 2007 04:29 PM
INTRODUCTION
by Teresa Tucker, Co-Founder of The MAGIC Foundation
Insurance is the most difficult area to navigate. The laws in each state are different. Contact your state’s insurance commissioner if you have questions particular to your state. Their number can be found in the White Pages of your phone book. Look in the front section in Government Listings; State Government Offices; Insurance Department – Insurance Commissioner.
Insurance is also different based upon your employer. Let’s say you & your neighbor work for the same company; you as labor & your neighbor as management. Your insurance may be different than his based upon negotiated contracts or unions. As boring as it can be, read your insurance contract, nothing beats being informed.
Your Human Resources Department can often help you navigate the insurance maze. They are the ones who should know what is contracted & they may even call the insurance company & question a decision. Your HR department or your union can often advocate for you with the insurance company.
Remember that you are the consumer, you pay your premiums & you deserve to get answers to your questions. When calling with questions about your insurance, don’t hesitate to ask for a supervisor above the person who answered the phone. ALWAYS keep records of phone calls. Write down the date & time you called, what number you called, the name of the person you are talking to (I suggest you politely ask their name before you start talking about anything else, especially if you are angry & the conversation may not be pleasant), where that person is located (many phone systems will direct you to the first available representative & that could be in Colorado or India), & always write down the substance of the conversation & their reply. Keep this log with your records & always have it handy when you call again. You are more intimidating to them if you can pinpoint previous conversations. Also, you are less likely to get hung up on while on hold or being transferred, if you have the name of the person whom you were talking. Try to stay calm & remind the person that you are not angry with them, as they did not cause the problem or issue, but that you are looking to them to help you resolve your problem.
When you receive a bill for your portion of pay, don’t hesitate to contact the company you owe money to & ask for a discount. Whether it is your co-pay or if your insurance did not cover the cost. The company is more likely willing to work with you on discounting the price & getting some sort of payment than sending you to collections. Be sure to know what you can afford before you call. You are more likely to get a positive response if you offer to pay 60% of the bill right now if they will write off the remainder, than if you just call & ask what they can do for you. Or if you cannot afford to pay the bill in one installment, call & ask for payment options. You will probably end up paying 100% but it beats having your credit rating ruined by being turned over to collections. You may not always get a positive response, but it never hurts to ask! Be sure to get the same type of information when you call as you would the insurance company. If you cannot say who offered you a discount & you are questioned later, you need to be able to prove your case.
COBRA laws are Federal, but each state may have additional laws that supersede the Federal laws but only if they are more strict. Because COBRA laws are extensive, please refer to the Department of Labor COBRA website for frequently asked questions at http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html.
Need a referral to a pediatric endocrinologist & your primary physician won’t give you one? Schedule an appointment & when you get into the exam room, tell the doctor that you are here for a referral & you are not leaving without one. Try being stubborne and say that you are NOT LEAVING the exam room until you have the referral; the doctor needs that room to see other patients & would probably rather give you the referral than have you hold up his daily schedule.
Leanne Manning's Commentary:
Take a moment to see the segment at: http://abcnews.go.com/GMA/OnCall/story?id=3314626&page=1 Also- if you could email ABC news letting them know about your thoughs about this story or personal struggles with the Medicaid system, that would be great. The more knowledgeable the general public becomes regarding the issues surrounding the Medicaid system…..The Better!
Changes like this also impact private insurance and access to care for children who are not on Medicaid, drives up cost of care, and eventually limits coverages and formularies in the private sector health care plans... not to mention the burden placed on schools to try and provide more and more services (on limited budgets) to children who are no longer able to get medical treatment and/or therapy... We as parents need to do our part in educating those that don’t understand the system (including our legislators and the Governors, who are an integral part of our children's health care team... they are the ones who make decisions about who is allowed to manage healthcare and how they do it- or don't do it... both private insurance companies as well as any Medicaid/Waiver program). I agree we need to be good stewards of taxpayers $$$, but we also have to take care of those that can’t take care of themselves; including our precious children who face ongoing health issues.
Let our voices be heard…..”UNITED… WE WILL MAKE A DIFFERENCE!” Comments can be submitted to ABC via the following web link (only 500 characters so be brief and to the point): http://abc.go.com/site/contactus.html?cat=Good%20Morning%20America Education and building awareness of the issues is the key to success in making change in the overall Medicaid system! We as parents and providers must continue to help others understand the need for necessary services. I do believe our children must be viewed as an INVESTMENT and NOT a Liability! In addition- the Wall Street Journal had an article on the front page of their newspaper yesterday titled “'Mainstreaming' Trend Tests Classroom Goals”. Unfortunately, I was not able to pull the entire story from their website (you have to be a subscriber). Here is the link for fyi: http://online.wsj.com/article/SB118254994081445264-search.html?
More and more, we as parents find ourselves taking on an advocate role... this occured so blatant to my own children when, last year, legislative changes caused both of my special needs children to lose coverage on half their medications (including growth hormone), all their therapy services were terminated, and two of their doctors no longer accept our insurance... none of us are that far away from the rippling effect of this affecting our children. For us, some of the issues have been worked through, but there is still a long way to go. My friend and fellow parent advocate, Heidi Moore (who sent over a lot of this information), try to provide information to other parents so we can come together and make a difference... your voice really does matter! What happens in Medicaid (whether your child is on state or federal medicaid or not) directly affects your child's healthcare providers, pharmaceutical manufacturers (especially growth hormone manufacturers), and your child's access to care in the private healthcare sector. Please take a moment and offer your comments in the links above. Help the children now, so that they can help themselves later!
Leanne Manning, TS Director
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